DBlog Week: More Than Diabetes

Yes, I know DBlog Week is over. I'm late to the party with this post. Reason? Life.

We were asked to write about our lives outside of diabetes. Here goes, folks.

I hate to cook

Like really, really hate it. And surprise, surprise, I stink at it too. I cannot cook anything. Oh I can do the basics - make some chicken, spaghetti, boil things. That's where my talent ends. And I am totally fine with it. If I never spent one more minute in a kitchen for the rest of my life, it would be alright with me. I really don't even care how pot roast is made, or how to cook fish. Nothing interests me less than cooking or talking about cooking. Don't get me wrong, I love to eat. It's the cooking I despise. But a WIN for me is that I raised three kids who eat very well, thank you. 

I coupon the hell out of everything.

I have a coupon for everything. I love to save money. I have always thought of coupons as free money and who doesn't love that?! I am not one of those crazy coupon ladies who buy 250 jars of mustard because they have coupons. If I do not need it, I do not buy it. But if I have free coupons for things, I get as many as I can and I drive to our local food bank and give them a donation. There's nothing that makes me happy like a good coupon.

I collect snowglobes.

I have about 300 of them. And I should probably post a picture of them here, right? Alas, as I type this, no photo. I promise to add one at some point. I have collected them since I was a little girl. I have them from all over the world, in all shapes and sizes. And yes, I shake them and watch the snow and glitter fall. I use my snowglobes folks, and people over the house are welcome to shake and touch and admire them all they want. Nothing brings me joy like a snowglobe.

I run a support group for parents of children and adults with autism in the Philly area.

When my oldest child was diagnosed with autism at age 2 1/2, she was the only child I knew with autism. She is 20 now. I thought there should be support for others on this journey, so I joined with other moms to create a support group, online and in person. We have over 250+ members, have meetings, and talk via a listserv. It's one of my proudest accomplishments. Parents don't feel so alone now.

There ya go, peeps. Something other than diabetes.

Now back to our regularly scheduled program.

DBlog Week: Chronic

Grace has grown up with diabetes since age 6, 

and is now 14, almost 15. 

There is a sense that this is the way it will be. 

And at times, 

that brings me a feeling of sadness 

that washes over it all. 

There is a hurry to the early days, 

months and years. 

I've felt days of sadness throughout them,

 but the teen years

 bring a different shadow.

Grace is on her own,

 dealing with her diabetes all day, every day. 

She's independent. 

I am the 'checking in' mom.

But it's all hers.

As a mom 

you don't think about how 

the chronic component will affect you. 

The chronic wears on me. 

The wearing 

creates the sadness

 that this will not change, 

no matter what I do.

So now we just wait it out. 

We just check

 and bolus

 and basal

 and carb count

 for the rest of her days.

 Yes, bionic pancreas,

 I hear you knocking.

 Still a device.

 Still something to tend.

 Still something to worry about 

as a mom. 

We do not talk enough

 about the monotony of it all. 

And the impact of the endless. 

We should. 

We should peek under the cover

 and bring it to the light.

DBlog Week: The Empowerment Game

Let’s not play the Blame Game. That game stinks.

Let’s play the Empowerment Game. Much better.

It’s 2009. Your six year old daughter has just been diagnosed with Type 1 diabetes and you are in the ER at a local hospital. It’s almost midnight. You are alone with her and you finally get to the hospital room after a long night in the ER. Your head is swimming with data and doctors and nurses and IVs and OMGs. You finally have a moment to think about it all.

And in walks a nurse and and a D parent.

‘We have some things for you. Can you talk for a minute?’

‘Yeah, I mean sure. We’re here aren’t we?’

‘I want you to meet Jane, she’s a parent of a child with diabetes just like your daughter. In fact, her daughter is 9 now and was diagnosed at age 5. She wanted to come say hello.’

‘Hi. I know it’s really really hard right now. Someone said this to me, and now I am saying it to you. You can do this. And I’ll be here to help, as part of your support team. If you want to talk, great, and if it takes you some time to talk, that’s fine too. Here’s my name, my cell phone number and my email. If you haven’t reached out to me in a few weeks, I’ll reach out to you, ok?’

‘Um, well, sure. You know, this is so overwhelming right now. I don’t even know what to ask. Thanks though.’

‘No problem. I’m just a phone call away. And I’ve been in your shoes. You are not alone.’

Rule #1 of the Empowerment Game: No one is in this alone.

D parent leaves.

In comes a box.

In the box is:

• The Pink Panther Book (how could I not folks, right?!)
• Think Like a Pancreas by Gary Scheiner
• A sample model of each kind of current pump on the market
• A sign that says ‘You Can Do This’
• A diabetes kit that matches your child’s interests and holds all their stuff
• Samples of: Unisolve wipes, SkinTac wipes, alcohol wipes, glucose tabs
• A medical ID bracelet for your child

Rule #2 of the Empowerment Game: No need to reinvent the wheel, others have tried them and they work, now you.

And what else is in the box?

A computer. Just for you. And it’s bookmarked to favorite blogs in the DOC. It’s bookmarked with informational websites about diabetes. It’s bookmarked to great DOC community sites.

Rule #3 of the Empowerment Game: No one is in this alone (see Rule #1) and there is a huge community of people who get it, who are willing to help.

There's one more thing that awaits you in this game. And it's the best one yet.
Oh look, here they come into your hospital room!

It's a representative from your insurance company.

'I am here to help you make this disease more manageable. I understand this is hard work, for everyone. The last thing you need is to fight insurance companies. I'll be your connection to an efficient, responsible and proactive system of care for your child. I will help you get what you need to keep her healthy and happy. Here's my direct phone number.'

Wouldn't this all be fantastic? To leave a place where your child was just diagnosed, with a full set of resources, connection, people who get it, and information to help you get on with caring for your child.

Dblog Week: The Cost of Insulin - I'm looking at YOU, Eli Lilly & Novo Nordisk

What's your life worth? No, really, what's it worth to you? Are you non-diabetic? Give me a figure. OK, now in a second, I changed your life. You're diabetic. Still worth as much? 

What's a vial of insulin worth? Eli Lilly and Novo Nordisk say it's worth a lot of money. More money than ever before. TONS more.  Feel better now? Eli Lilly and Novo Nordisk both increased their insulin price by 7.9% recently. Why, you ask? This is the standard mantra I hear repeated at us in the DOC when we ask: 'It's complicated.'

You know what's complicated? Brain surgery. Heart valve replacement. Advanced Calculus. Getting a 3 year old to stay in their own bed at night. Those things are hard. Providing and making insulin as a company, don't even talk to me about complicated. It's only complicated because they do not want to admit that they want more profit. Hands down profit, on the backs of people with diabetes. Diabetes is the new black.

As of May 2, the list price of Humalog, a short-acting insulin, is $274.70 for a 10 ml bottle, an increase of 7.8% from what the list price had been since July 2016. On May 2, Lilly also took a 7.8% list price increase to Humulin, an older form of insulin. Novo Nordisk, which also makes a short-acting insulin, increased its prices to the drug in 2017. In February, the drugmaker raised its price to $275.58 for a 10 ml bottle, up 7.9% from what the list price had been since July 2016. In December, Novo Nordisk committed to limiting all future drug list price increases from the company to single digit percentages. Novo did not immediately return a request for comment.

Over the last decade, the list prices of the two drugs have increased by 290%. 

Dear Jesus on a bike. What the actual hell? 

I mean, come on folks, more competition in the marketplace, the price goes down, right? 

Oh, you're diabetic. I forgot. For you, the price goes up. They know we need insulin to live.

We are 75 years after the patent for insulin expired. Prices should drop, right?

Oh, ok, they've made improvements to insulin since then. Ok, I will give them that. Faster, longer acting, more stable. But, 75 years???

Then we have the middleman who needs to get paid, the pharmacy benefits manager. The PBM (which I desperately want to call the PBJ in honor of a peanut butter and jelly sandwich) gets rebates to keep our favorite insulins, or our not-so-favorite insulins, on their preferred formulary list. Yeah, we need more transparency here, insurance companies and PBMs. 

There is so much more. I have read it all. Ad nauseum. Over and over and over. And I am done. I have so many articles and websites and hashtags and blogs in front of me, and they are all angry. People cannot afford insulin. We have people in the DOC rationing insulin. We have calls to alarm for those who need it right now and are you in Philly? Cause I can get it to Philly. Oh no, Iowa, crap, we need some DOC members in Iowa. Since when did the DOC become the black market for insulin? Well, since greed took center stage, Eli Lilly and Novo Nordisk. 

There's a time for playing nice and there's a time for harnessing our power, collectively. We, the people with diabetes, and the caregivers of young folk with diabetes, we hold the purse strings. We cannot live without insulin, but we have power, more than we realize.

First things first, DOC, - GET OUT OF BED WITH PHARMA.

I mean it. Right now. Get out of the damn bed. I'll wait. Don't accept gifts and flights and hotel rooms and food and parties and invites and groups and meetings and speaking fees and cocktail parties and little events from them. And while you are at it, some members of the DOC, stop telling me I'm 'jealous because I didn't get invited to an event.' Enough with that truckload of crap. What a reducing of a monumental issue because you think I'm offended. You know what offends me? World hunger, injustice, bigotry and unaffordable insulin. I refuse to take it, the crap and the money. 

And if they support your app, give the money back. Crowdsource the app from the DOC. I'll start with $25.00. Be beholden to no one. If we really want it to change, they'll listen when they don't have money in our pockets.

Write your Congressmen and women. Get the forces that be in our government to investigate price gouging. There are already alerts in the Congressmen and women's ears about this. It's all over the news. Capture it now. Speak to your local reps. Go to your capital. I'm asking for meetings with my two Congressmen and I'm bringing a little pre-teen diabetic with me. Heaven help them.

Hell, let's have a Diabetic March on Washington. Name the time and place, I'm there.

Haven't we had enough, folks? Isn't it about time we demand #Insulin4all - affordable and accessible. Then, let's rise.

DBlog Week: Unexpected Normal

I never expected that this would be normal. I didn't think that one day we would just roll with a 317 BG, like it's no big deal. I didn't think that one day I would not talk about the 39 BG that hit at 3 AM. I thought all of it was everything, all the time. And it was, but now it's not.

Maybe that makes me a shitty D parent. Maybe it makes me a 'normal' one, I don't know. Maybe it just is what it is. After 8 years of the D, and raising a young girl to a teen, I cannot ride the rollercoaster any more. It takes too much of my soul and my energy. 

I used to stay awake all night, watching the 317 lower, or in some cases, get higher. And I wouldn't go to bed until it was 'within range.' It might take 30 minutes, or it might be hours. It was anyone's call how it would turn out. How it usually turned out was I was exhausted and no good to anyone the next day. Same with a very low BG. I used to stay awake for hours waiting for it to rise, rise rise. I still DO stay awake to see the lows come up, but our lows have adjusted. For Grace, a 40-ish BG warrants me staying up, a 50-ish does not.

Instead, I know a strong temp basal increase along with a great big truckload of insulin will get my Grace down from the high. And it will happen within 2-3 hours. And I know that a Juicy Juice and a granola bar will raise her BG about 50 in about 30 minutes. And I give her them and I come back in about 2 hours to make sure they worked. I don't sit and wait anymore. 

The 'new normal' is what is unexpected. It crept up on me. There was no big light switch that turned on, or off, for that matter. It was a slow turning to a manageable life with an unmanageable illness.

Diabetes Blog Week Is Coming!

Thanks to Karen over at Bitter-Sweet Diabetes for the wonderful 8th Annual Diabetes Blog Week each year. This year I'll be writing every day for a week from May 15th - 19th.

The topics are:

Monday - Diabetes and the Unexpected
Tuesday - The Cost of a Chronic Illness
Wednesday - The Blame Game
Thursday - Throwback Thursday: What Brings Me Down
Friday - More Than Diabetes
Wildcard - Diabetes Bloopers

I'm ready to go! See you on Monday!